Archive for November, 2010

We’re extremely grateful to everyone who has supplied us with photos and news of what they’ve been up to…we’ve been quite staggered by the amount of activity. Thank you, one and all.

As we move into the late stages of the campaign the PuckerUp4PH campaign team, led by Paul Pennington & Elizabeth Hinchey, would like to pay tribute to the PHA-UK trustees and all the PHA-UK staff and members for their support throughout the lifecycle of this intiaitive. We’ll have more on the campaign in the Xmas edition of the PHA-UK radio show ‘EmPHAsis On Air’, including the estimate, ahead of the official count, of just how many blue kisses we will/have recieved. (You can listen in via the PHA-UK website www.phassociation.uk.com from the 5th of December)

A big thank you also to United Therapeutics, Pfizer, Actelion & Bayer for their two year Global support of the PuckerUp4PH campaign made available via unrestricted educational grants , and to GSK for their contribution in Europe. Further grateful thanks to Bayer for funding the printing and dissemination of campaign materials (in 10 languages) across the Globe and to their regional offices for being supportive of all the participating association’s events & initiatives.

Around the World..

Puerto Rico, we salute you!! Luz Batista Santiago, who generously donated her lips to form the Blue Lip logo used this year has led from the front. Her group alone will have generated a quarter of the lip prints needed to break the World record. Our thanks to everyone in Puerto Rico for their support and hard work. Congratulations also to the other Puerto Rican group led by Mrs Mineliz Colon. To hear of the signifcant impact this campaign has had in raising understanding of the condition in your part of the world and beyond by both groups is truly fantastic.

Thank you New Zealand for your 960 kisses and all that you’ve done to get more poeple to be PH aware.

We’re grateful to our friends in Singapore, who have completed collecting kisses from 3 other major centres, Tan Tock Seng Hospital, the National Heart Centre at the Singapore General Hospital & National University Hospital. The last roadshow on the 4th November 2010 rounded up their PuckerUp4PH Singapore campaign. A big thank you to everyone who took part, to the hospitals and health care professionals who showed their support and to Bayer’s representatives who did so much to support the initiatives locally.

A huge thank you to our PHriends in Israel, who certainly set a high bar in the early stages of the campaign and whose creative use of the blue lip ‘logo was an interesting talking point across the World. They and we would like to send our grateful thanks to Neopharm for their support of all the Israeli activities.

Congratulations to all the participating groups across Canada who look like delivering three to four times more kisses than was first expected, so many great individual and group efforts to raise awareness of PH and contribute to the World record attempt. Attendees of the first ever Ottawa support group meeting at the Ottawa Heart Institute as well as other heart institute staff and visitors participated in puckering up before their meeting (103 kisses) Jo-Anne Mainwood collected an additional 530 kisses from Trillium Elementary School, Orleans Ontario where she teaches and another from St Peter Catholic High School in Orleans, Ontario. She’s on her way to contributing well over 1000 blue kisses.

Thank you to all at Germany’s – Pulmonale Hypertonie EV for their support from the start of the campaign. Through several events and patient meetings they’ve delivered far more kisses than expected. Bayer,once again have been particularly active and supportive there.

Although relative late comers to the campaign, the Spanish involvement in the PuckerUpPH has been immense, truly amazign and are giving Puerto Rico a run for who will contribute the most blue kisses and PH awareness with so many people and organisations getting behind what we are collectively seeking to acheive, for instance the chain of supermarkets DIA, delivered information and material between its employees around Spain and many of them participated weighing in with over 3000 kisses.

Central and Southern America have really embraced the Blue Lip logo and PH awareness raising scheme , extensive media coverage and a huge number of small and large events they even have a Blue Kiss song! Special thanks to the PH Latin Society and once again to Bayer’s representatives for all your involvement.

In Mexico, despite not being able to be involved in the campaign until late on, after problems with local customs significantly delayed the release of their kiss collecting & awareness swelling materials, they have gone about their task with great gusto. We salute everyone whose done so much to make this initiative a success there. We are only just starting to learn of how many kisses have been collected..the only one word we can find to summarise our feelings..is ‘wow’ !!

In the US, so many support groups, church organisations, schools, universities and individual efforts doing what they can (Christine Dickler from PHA in the US will be a guest on the forthcoming PHA-UK radio show, available via the phassociation.uk.com wesbite from the 5th of December discussing the impact of the PuckerUp4PH campaign there and across the planet) thank you one and all for all that you’ve done. Here’s just a small sample of the activities we know of: Childrens Day at the Louisiana Pecan Festival saw a Pucker Up Booth thanks to Regina Maddox. Ashley Orr has been busy not only getting her college, University of Alabama, involved, but also another, University of Alabama Birmingham. She firmly believes she will surpass her goal of 600 kisses and huge amounts of PH awareness, very easily. Young PH-er Maddie Bonpin celebrated her 5th birthday this week and 33 friends combined celebrating this lovely little girls life and PH awareness month by puckering up! Congratulations to Lauren Johnson who tells us she’s had a real blast encouraging people at her school (Carl Albert High in Mid West City) and others to get involved. She’s well on her way to making a significant contribution to our record attempt, more important of course is the numbers of people who now know about PH and fully understand what she lives with. Such an inspiring young woman,one of many folk in US we’ve become friends with, who like their PHriends around the World we respect and admire.

Our thanks to Novartis in East Hanover – Volunteers set-up booths outside the 3 main cafeterias for 3 hours on the Novartis Pharmaceuticals East Hanover NJ campus and collected blue lip prints from participants, we understand colleagues in Switzerland and the UK got involved also.

PHA-Australia have been hard at work getting the good folk of their country involved and interested in the campaign, we’d particularly like to thank PHA-A president Joan Godber and all the group’s members for their fantastic support. A special mention for Bayer and Pfizer for their local support of PHA-A activities in PH awareness month.

We’d like to thank all our Irish friends, Norwegian, Polish and South African Phriends for your involvement. We look forward to hearing your news soon.

Hello to everyone in Afghanistan and Bosnia Herzegovina for their contribution to boosting knowledge and understanding of PH as well as the kisses you’ve contributed to the World record attempt. (A special hello to Emina Hadzihasanovic from Bosnia and Herzegovina thank you and your friends for your 43 blue lip prints, we will not be updating the blue lip tally on the home page, but we will keep you up to date and all our other followers around the world with all the latest news on Blue Lip print collecting via this PuckerUp4PH blog and of course our facebook page. Once all prints are gathered and verified we will announce the final tally for each nation in the 2010 campaign.)

In Italy, congratulations to one and all who got involved. Hello to AMIP member Silvia Veccholi who had a gazebo dedicated to PH at a “antiques market” that is held in Ostia Lido, a little town near Rome. She handed out our leaflets, spoke about her experience with the illness and collected many blue kisses.

Over the last few weeks the McGrath Family have been hard at work holding events in the name of Pulmonary Hypertension. Their mission was to collect as many Lip Imprints a possible. In their own words here’s a snap shot they’ve been up to.

“Our first event kicked off with an ambitious goal of getting 500 people together to participate in a Zumba dance class in the name of Pulmonary Hypertension. We didn’t quite get to our goal however amazingly some 300 people came out in support of the event on a sunny Saturday morning. It was a great chance to raise awareness and also celebrate the short but full life of young Alex McGrath and boy who loved to groove. Thankyou to the YMCA Redland Bay, the Zumba instructors for giving up their time and the many people who supported by attending, puckering up and dancing on the big day.

Collecting of lip imprints has continued across various community groups and work locations. Alex’s primary school St Rita’s showed their support in his memory getting students, teachers and support staff to pucker up.

The dedicated Nurses and Doctors that work out of the Brisbane Mater Children’s Hospital Respiratory Unit and Children’s Wards take a moment out of their busy day to get involved in puckering up in support of the world record effort.

Finally some one hundred (100) people from the team at the Woolworths Limited Distribution Centre lend their lips and have a lot of fun in the process. Don’t worry guys its just zink.

We would like to thank everyone who has taken time to support, encourage and of course lend his or her lips for this wonderful cause. This has certainly been a positive and rewarding way to raise awareness and honour our “Little Man”.

It’s absolutely brilliant, if not a little overwhelming, to see the scale of our supporters work across the World arrive at the puckerup4ph headquarters. Although within sight of the end of this campaign, we are still receiving enquiries from across the World wanting to get involved!! Fantastic!!

A huge thank you to everyone that is preparing lists of the names of people who have puckeredup4ph and learnt about the condition. Thanks also to those who have sent initial batches of kisses back, along with photos, media coverage et al. We will do all we can to share as much as we can, but that’s quite a task!! We really are taken aback by all that everyone has done, from single kisses of folk who just want to show their support from afar to group efforts. With so much to gather and process we will be delaying, only slightly, the official count and verification process but hope to share via the PHA-UK radio show, emPHAsis on-air, an estimate of the size of our acheivements. This should be online at the www.phassociation.uk.com website from the 5th of December onwards.

Excitement is certainly starting to mount here at PuckerUp4PH as we move towards the end of November with the first batches of blue lip prints starting to arrive from the 4 corners of the Earth. We will not know officially as to whether we have broken the world record until such time as it is adjudicated..but if the numbers of kisses heading our way from Puerto Rico are anything to go by (over 10,000, a quarter of our total) we could be on track to surpass our goal of 40,000 lip prints.

We know of more activities taking place this week across the world and wish everyone well with their endeavours.

Many thanks to everyone who is busying themselves putting together the lists of all the people who have become PH aware and contributed their lips to our World record attempt. This effort really does make a difference to the processing time of the world record attempt.

We’ll keep you up to date with all the developments as they happen on the run into the end of this campaign.

It’s November, International PH Awareness month, and people all over the world are doing their best to help us towards this global goal of setting a new Guinness World Record TM for the largest collection of blue lip prints. With only a few weeks to go, we are increasingly confident that if everyone continues with their current energy and inspiration, we’ll be able to finish the second year of the PuckerUp4PH initiative with some VERY exciting news!

We’ve had word back that the Puerto Ricans and the Aussies have started to gather up all their kisses ready to send back to us, whilst the New Zealanders and the Italians have kisses winging their way towards us to join the first parcels already received from Germany and the USA – and we know there are many more to come!

Let me start this week’s round up of Blue Lips activity with a huge CONGRATULATIONS to Linda Smith, mother of PHA-UK’s Jenny Leafe, who last Sunday ran the 7mile Shepshed 7 race in a fabulous time. Linda far exceeded her fundraising goal for the PHA-UK and also prompted a lot of curiosity about PH and the initiative by completing the run wearing blue lips and a PuckerUp4PH t-shirt. Thanks so much Linda!

Over in Spain, PHA-UK’s Jane Taylor is at it again. This time collecting 60 blue kisses in under an hour! She has several more plans in Spain before she winds up her personal contribution to the record attempt including a booth at the local Christmas Fayre on the 20th of this month.

Also in Spain, the Fundación Contra la Hipertensión Pulmonar (FCHP) have been continuuing their PuckerUp4PH partnership with the Fuenalabrada Basketball team at another home game – this one attended by Fuenli who is the mascot of the children of the town of Fuenlabrada.

South Africa have joined the campaign also in the last few weeks and we really look forward to hearing more news about their first event!

PHA-UK’s annual conference took place over the weekend in an event celebrating a decade of success for the association. On an unusually sunny autumn Saturday in Manchester, the morning’s events included an address from PHA-UK Chairman Iain Armstrong, a presentation from PH Consultant Dr John Wort, several patient reflections and a “Question Time” with a panel of PH experts.

The conference was attended by over 200 PHA-UK members, family and friends and another 300 or so more were able to watch the proceedings via a live web-stream! For all our friends around the world who couldn’t be there, the video is now archived on the PHA-UK website and can be viewed here.

Break out activities in the afternoon included African drumming, pilates, hypnotherapy, Thai Chi, relaxation techniques, First Aid, a session to introduce the newly revamped PHA-UK website and the very popular chocolate making course!

In between the sessions, members had the opportunity to catch up with friends, peruse a few trade stands and of course, PuckerUp4PH! There was a lot of interest in the successes of all the other associations participating around the world and loads of our favourite photos from the global initiative were on display. Many attending have already lent their lips over the last couple of months so they took the opportunity to collect additional Blue Lips kits to see them through their final kiss collecting activities in November.

Even members of the crew and the friendly staff at the Hilton got involved!

All in, 199 kisses were counted after the weekend, a number that didn’t seem to sit well with PuckerUp4PH campaign director Paul Pennington, so now back in the office he has rounded the tally up to 200 with his very own Blue Lip print!

Others in the UK have been busy too. Loughborough Uni celebrated their freshers week with over 100 new students lending their lips and learning about PH. A huge thanks goes to Peter Dickenson of Robert Bakewell Hall for coordinating this contribution.

In London in the last week, DDB Health have done their bit to promote a greater awareness and understanding of PH in the workplace taking some time out to blue up, get kissing and adding another 115 kisses to the pot in the process.